I put on a recent post that my GP justified his lack of intervention because I did not shows signs in my blood of anaemia in 2012. He has tried to label me with fibromyalgia since after numerous visits and different medications. Finally in July 16 I gave in and he took blood so he could send me to a rheumatologist to confirm his thoughts. It came back with results b12 145 so I commenced injections. I had a fight to get every other day until symptoms stop improving as I have neurological symptoms. So I have shown little changes but definitely improving so asked for more injections which he gave but I had to fight. I have now received a letter explaining to me that he agrees with his initial decision to not treat as I was only showing b12 low serum levels of 125 (I was in third trimester of pregnancy) and nothing wrong with my heamoglobin. He also further justified this by my b12 being 212 in July 2015 which is not deficient. He also has gone into say due to me being in treatment since 29/7/16 he would like my blood redone as he is worried that my b12 may be to high. He acknowledges that I have seen improvement with neurological symptoms and apologies that he did not take bloods between 2012 to 2015 despite presenting to him with neurological symptoms. So my question is is there any written evidence to suggest that the nice and BNF guidelines for the treatment of b12 deficiency with neurological symptoms should in any way be dictated by b12 serum levels of when it should stop. Is there verified evidence that suggests this is an issue. The point that my b12 was 212 is deemed as normal it is difficult to provide him with the clinical evidence. I am in the process of compiling an evidence folder to submit with a complaint about the lack of treatment/investigations but have reached a stumbling block trying to evidence these factors. I hope this makes sense. I intend to subscribe to PAS but have no funds until the end of the month. I hope this is not an issue in asking for information. Kind regards
I attach a copy of letter. Any advice appreciated
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Abijah
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Download my summary document (it's in the bottom of the pinned posts over on the right). That includes links to several expert documents and extracts of the important bits. There are three that your doctor needs to know -
1. Not everybody with PA has macrocytic anaemia - or any other blood problems.
2. Once supplements have been started further blood testing for B12 in unnecessary.
3. There is no such thing as B12 being 'too high' or 'going out of control'.
I would send him/her a copy with those bits highlighted.
Thank you @fbirder I have printed your list off to go with my letter. I'm concerned that I may end up SI. I'm a nurse so the activity does not bother me but I would prefer to have the blessing and involvement of my GP.
Re. " he agrees with his initial decision to not treat as I was only showing b12 low serum levels of 125 (I was in third trimester of pregnancy) and nothing wrong with my heamoglobin. He also further justified this by my b12 being 212 in July 2015 which is not deficient". !!!
Words fail me. I would change my doctor - unbelievable that a GP should be so ignorant as to ignore such low levels now when it is known that pregnancy creates high demand of B12 and is so important to the health of both mother and child.
Before you leave, you should send the following from the above BMJ latest research document:
"Deficiency can manifest in different groups as a result of periods when requirements are increased, such as during growth in children and adolescence or in pregnancy."
and
"it is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases treatment should still be given without delay."
and
"Homocysteine or methylmalonic acid should normalise during the first week of treatment. Failure to do so suggests an incorrect diagnosis, unless renal failure or other causes of increases in the metabolites coexist. Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not usually required."
Thank you Polaris .... Validation to change GP is just what I need but I am going to convey my views before I leave as you suggest. Thanks for the helpful link too.
It is so depressing that there are so many GPs out there like yours who think B12 deficiency is all about macrocytosis and megaloblastic anaemia. At the very least your GP needs to be aware that B12 isn't just used to produce healthy red blood cells - it is also used to maintain the lining around nerve cells, release energy in muscles and for processes in the brain - all of which are totally independent of anaemia - and problems with each can occur independently. Something like 30% of people present with neurological and neuropsychiatric problems long before any anaemia manifests. Sorry - you probably know all of this already and I'm sure it is covered in the papers that fbirder has pointed you to.
This website has examples of NHS B12 howlers on it and I think your GPs letter is deserving of an airing on that
PS. Extracts from the book, 'Could it be B12?' By Sally Pacholok & Dr J. Stuart .She and her husband worked on the frontline for years in emergency medicine in a large city hospital, seeing and treating first hand the varying results of B12 deficiency:
"deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml." "For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
"neurological symptoms can occur in isolation, so it is important to consider a diagnosis of B12 deficiency in the presence of neurological symptoms of unknown cause as neurological symptoms may progress and become irreversible."
The BCSH Cobalamin and Folate guidelines came out in 2014. Have your GPs got a copy? I gave a copy of the whole document to my GPs.
I found that in some areas of the UK, GPs are using local NHS B12 guidelines, some of which have not been updated since the BCSH Cobalamin guidelines came out in 2014. Do you know what your local NHS B12 guidelines are? When I read my local Guidelines, it helped me to understand why I had not been given the treatment I expected.
page 8 in "BCSH Cobalamin and Folate guidelines" gives details of UK B12 treatment for those with and those without neurologicla symptoms, Treatment is more intensive for those with neuro problems.
page 29 in the BCSH Cobalamin and Folate guidelines is a diagnosis and treatment flowchart that shows the UK recommended process doctors should follow with those they suspect may have b12 deficiency.
I found "Could it be b12" by Sally Pacholok and JJ. Stuart very helpful, reading it was a lightbulb moment for me. At the end of each chapter is a list of research articles.
There is an app mentioned on Martyn Hooper's blog that can count towards GPs Continuous Professional Development (CPD. Perhaps your GP might be interested.
Oh sorry Sleepybunny i have just seen your post. Thank you for your support and supporting documents. I will get the book by Martyn Hooper and take that to my GP.
Just to update you all who have kindly guided me. I have success from my GP. I did as he asked and had my blood test and of course it was over 1500 (apparently it doesn't read over this). So I received a call from first a care assistant to tell me my levels and that I would no longer receive treatment and as I wasn't happy I asked for a copy of the guidelines they follow and the answer was no. She said she would get a nurse to call me back. So a day later that call took place and she told me that my b12 was at toxic levels so I asked where she was getting her current evidence ..... No adequate answer and she was very rude that I challenged her and pointed out that I am a nurse also and have to use current evidence based practice and current up to date guidelines and I wanted to know and I believe it is my right to know where the evidence she was working with comes from. She fumbled and said she would get my GP to call. He called and agreed to see me face to face. I went armed with all the evidence you had all pointed me to and he listened and tried to justify he decisions about my treatment. He also fumbled a lot but he agreed to read said evidence and also agreed to treat me until I was seen urgently by a haematologist as he evidently does not have the knowledge to treat me successfully. I'd call that a result for me and if he reads all the material I gave him...... Possibly one less ignorant GP and others may not have to suffer. THANK YOU PAS 😀
"as I wasn't happy I asked for a copy of the guidelines they follow and the answer was no"
You should be able to locate local NHS B12 guidelines by one of the following
1) Internet search
2)Search on your local NHS website, possibly under haematology guidelines/policies
3) FOI (freedom of Information) request to local NHS website
4) If the above fail, MPs can be useful in getting answers from officials
"she told me that my b12 was at toxic levels "
fbirder has compiled a summary of b12 documents. Pretty sure there is something in it that might help to argue against what nurse said. Link to his summary on his profile page and also a link in third pinned post on this forum. I take a copy of his summary to appts.
Well informed is well armed in my personal opinion.
Some people on this forum join the PAS (pernicious Anameia society). in some cases they can intervene on behalf of members who are not getting correct treatment.
If you have time it might be worth posting your update as a new post as sometimes responses get missed if thread is a few days old. i'm sure other people would love to hear your good news and may be able to give their experiences of similar difficulties with nurses /GPs (in fact the cynic in me suspects that most of us can).
Haematologists
Hopefully you will get a good one who has done their homework on b12 but be prepared for one who hasn't........
Your local CCG if you are in England may be able to tell you if the BCSH Cobalamin and Folate guidelines are being followed in your area. MP may be able to help find out or possibly an FOI request to local NHS. perhaps NHS england can help?
Hi Sleepybunny ... thanks I will repost and as for the haemologist ... don't think this is hopeful as local authoriry don't seem to be using current guidelines .... still appointment not till end of November so that's still another month out the GP of injections .... I may still end up treating myself but as least I've tried my best to spread some evidence based practice 😀
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